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Riley Taitingfong, C. Bloss, Cynthia Triplett, Julie Cakici, N. Garrison, S. Cole, J. Stoner, L. Ohno-Machado (2020)
A systematic literature review of Native American and Pacific Islanders’ perspectives on health data privacy in the United StatesJournal of the American Medical Informatics Association : JAMIA, 27
BA Israel, AJ Schulz, EA Parker (1998)
Review of community-based research: assessing partnership approaches to improve public healthNat Commun, 19
Harding M., Sajantila Antti (1998)
Human genome diversity—a Project?Nature Genetics, 18
(2012)
Center and MSU Center for Native Health Partnerships
G. Bush, M. Dukakis (1988)
Science PolicyMRS Bulletin, 33
R Taitingfong, CS Bloss, C Triplett (2020)
A systematic literature review of Native American and Pacific Islanders? perspectives on health data privacy in the United StatesHealth Promot Pract, 27
Christina Pacheco, S. Daley, Travis Brown, Melissa Filippi, K. Greiner, Christine Daley (2013)
Moving forward: breaking the cycle of mistrust between American Indians and researchers.American journal of public health, 103 12
SC Hull, DR. Wilson Diné (2017)
Beyond Belmont: ensuring respect for AI/AN communities through tribal IRBs, laws, and policiesJ Am Med Inform Assoc, 17
S. Carroll, D. Rodriguez-Lonebear, Andrew Martinez (2019)
Indigenous Data Governance: Strategies from United States Native NationsData science journal, 18
N. Wallerstein, B. Duran (2006)
Using Community-Based Participatory Research to Address Health DisparitiesHealth Promotion Practice, 7
EF. Foulks (1989)
Misalliances in the Barrow Alcohol StudyJ Health Biomed Law, 2
Linda Smith (2000)
Decolonizing Methodologies: Research and Indigenous Peoples
Katherine Drabiak-Syed (2010)
Lessons from Havasupai Tribe v. Arizona State University Board of Regents: Recognizing Group, Cultural, and Dignitary Harms as Legitimate Risks Warranting Integration into Research Practice
E. Foulks (1989)
Misalliances in the Barrow Alcohol Study.American Indian and Alaska native mental health research : journal of the National Center, 2 3
NIH Tribal Consultation Report: NIH Draft Policy for Data Management and Sharing
N. Piquemal (2001)
Free and informed consent in research involving Native American communitiesAmerican Indian Culture and Research Journal, 25
S. Hull, David Diné (2017)
Beyond Belmont: Ensuring Respect for AI/AN Communities Through Tribal IRBs, Laws, and PoliciesThe American Journal of Bioethics, 17
Principles of Community-based Research
B. Israel, A. Schulz, Edith Parker, A. Becker (1998)
Review of community-based research: assessing partnership approaches to improve public health.Annual review of public health, 19
(2009)
Research that Benefits Native People: A Guide for Tribal Leaders
Guidance on the Implementation of the HHS Tribal Consultation Policy
National Institutes of Health. Final NIH Policy for Data Management and Sharing
Office of Intergovernmental and External Affairs (IEA)
(2022)
School of Medicine Department of Biomedical Informatics
K. Tsosie, Katrina Claw, N. Garrison (2021)
Considering “Respect for Sovereignty” Beyond the Belmont Report and the Common Rule: Ethical and Legal Implications for American Indian and Alaska Native PeoplesThe American Journal of Bioethics, 21
(2013)
Genomic justice for Native Americans: impact of the Havasupai case on genetic research
T. Brown, B. Katz (2009)
Change by Design: How Design Thinking Transforms Organizations and Inspires Innovation
NB Wallerstein, B. Duran (2006)
Using community-based participatory research to address health disparitiesAm J Public Health, 7
D. Harry (1993)
The Human Genome Diversity ProjectProg Community Health Partnersh, 8
KS Tsosie, KG Claw, NA. Garrison (2021)
Considering ?Respect for Sovereignty? beyond the Belmont report and the common rule: ethical and legal implications for American Indian and Alaska native peoplesAbya Yala News, 21
K. Tsosie, J. Yracheta, D. Dickenson (2019)
Overvaluing individual consent ignores risks to tribal participantsNature Reviews Genetics, 20
Shawn Wilson (2004)
Research as ceremony : articulating an indigenous research paradigm
(2022)
Study (SHS)
J. Kaiser (2019)
Why NIH is beefing up its data sharing rules after 16 yearsScience
Katrina Claw, Matthew Anderson, Rene Begay, K. Tsosie, Keolu Fox, N. Garrison (2018)
A framework for enhancing ethical genomic research with Indigenous communitiesNature Communications, 9
K. Tsosie, J. Yracheta, Jessica Kolopenuk, Janis Geary (2021)
We Have “Gifted” Enough: Indigenous Genomic Data Sovereignty in Precision MedicineThe American Journal of Bioethics, 21
T. Brockie, Gail Dana-Sacco, Miriam López, Lawrence Wetsit (2017)
Essentials of Research Engagement With Native American Tribes: Data Collection Reflections of a Tribal Research TeamProgress in Community Health Partnerships: Research, Education, and Action, 11
Suzanne Christopher, Malia Villegas, Christina Daulton (2012)
‘Walk softly and listen carefully’: Building research relationships with tribal communities
M. Chinali, G. Simone, M. Roman, J. Bella, Jennifer Liu, Elisa Lee, L. Best, B. Howard, R. Devereux (2005)
The Strong Heart Study
Heart Study (SHS). nhlbi.nih.gov/science/strong-heartstudy-shs Accessed
N. Piquemal (2001)
Free and informed consent in research involving Native American communitiesAnnu Rev Public Health, 25
Katrina Claw, Nicola Dundas, Michael Parrish, Rene Begay, Travis Teller, N. Garrison, F. Sage (2021)
Perspectives on Genetic Research: Results From a Survey of Navajo Community MembersFrontiers in Genetics, 12
Protecting Privacy and Facilitating Shared Access of Clinical and Genetic Data of Special Populations
KG Claw, MZ Anderson, RL Begay (2018)
A framework for enhancing ethical genomic research with Indigenous communitiesAm J Bioeth, 9
(2020)
Research Office
Tim Noe, S. Manson, C. Croy, H. McGough, J. Henderson, D. Buchwald (2007)
The influence of community-based participatory research principles on the likelihood of participation in health research in American Indian communities.Ethnicity & disease, 17 1 Suppl 1
KG Claw, N Dundas, MS Parrish (2021)
Perspectives on genetic research: results from a survey of Navajo Community MembersAm J Bioeth, 12
B. Israel, E. Eng, A. Schulz, E. Parker (2005)
Methods in Community-Based Participatory Research for Health
T. Kukutai, John Taylor (2016)
Indigenous Data Sovereignty: Toward an agenda
Promoting Indigenous Data Sovereignty Through Decolonizing Data and Indigenous Data Governance
Tina Cook (2018)
Community-based participatory research for health: advancing social and health equityEducational Action Research, 27
KS Tsosie, JM Yracheta, D. Dickenson (2019)
Overvaluing individual consent ignores risks to tribal participantsAm Indian Cult Res J, 20
Broad health data sharing raises myriad ethical issues related to data protection and privacy. These issues are of particular relevance to Native Americans, who reserve distinct individual and collective rights to control data about their communities. We sought to gather input from tribal community leaders on how best to understand health data privacy and sharing preferences in this population. We conducted a workshop with 14 tribal leaders connected to the Strong Heart Study to codesign a research study to assess preferences concerning health data privacy for biomedical research. Workshop participants provided specific recommendations regarding who should be consulted, what questions should be posed, and what methods should be used, underscoring the importance of relationship-building between researchers and tribal communities. Biomedical researchers and informaticians who collect and analyze health information from Native communities have a unique responsibility to safeguard these data in ways that align to the preferences of specific communities.
Journal of the American Medical Informatics Association – Oxford University Press
Published: Mar 29, 2022
Keywords: health information privacy; tribal consultation; community-based participatory research (CBPR); indigenous populations
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